Today is Rare Disease Day

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Today is Rare Disease Day
News February 28 2018

Today is Rare Disease Day, a day of recognition aimed at raising awareness of rare diseases and reinforcing their status as a public health priority. This year’s theme is research, a key element in finding a cure for rare diseases around the world.

Eddie and Jill Vedder are co-founders of the EB Research Partnership, an organization dedicated to funding research aimed at treating, and ultimately curing, Epidermolysis Bullosa (EB). 

Individuals with EB lack a critical protein that binds the layers of skin together. Without this protein, the skin tears apart, blisters and sheers off, leading to severe pain, disfigurement, and wounds that never heal. There is currently no cure.

You can support finding a cure for EB by:

1. Making a contribution to EB Research Partnership 

2. Show how you #JoinHandsForEB by posting a photo to social media using the hashtag, and tagging @Pearl Jam and @EBResearch

Mikey's Story

These are Mikey’s hands. Each day, this brave little boy faces unimaginable pain as his skin blisters and tears at the slightest touch. Kids like Mikey are lucky to make it to their 30th birthdays. The work being done at EB Research Partnership is going to change that. They put every dollar towards innovation in technology and research, bringing together the most brilliant minds to make progress for kids and their families suffering from this horrible disease. 


  • kce8kce8 Posts: 1,477
    We have so many problems everywhere all the time and we nearly get used to it somehow... but to see these poor kids and their families suffering from this f.. disease every single day again and again is just so heartbreaking. 
    I couldn't even imagine to deal with it.

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